Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Food effects/medicine

My son has yet to take any meds for the Myotonia but I will share that when in middle school (3 years ago-7th grade) the kids were taking something called No Doze. I guess it is the drug choice of that age. My son was given it and did take it. The reaction was severe. It did not pep him up, however. It literally put him out cold. We had to keep him home for 3 days from school as he could barely keep his eyes open. Adverse reaction to what the other kids got from taking No Doze. He should of been expeled from school but they decided that what happened to him was much more severe then kicking him out of school. They came down really hard on the people they said gave it to him. Some of the kids at school told when my son started to get really sleepy in school. We were thankful that the kids were honest and told the truth about what he took. I think people with Myotonia have to be very careful. As for drinking alcohol and taking any illegal drugs, my son's doctor read him the riot act. He told him, you take nothing from nobody if I don't okay it. That means doctor's, friends, anyone.

Jan is not kidding either about Anesthia. She is heads on, on this topic. I spoke to a doctor in this field who said that you need to be your own advocate, because, most don't know about Myotonia...he happened to know about it and the differences you need to take with a patient with Myotonia for surgery.

I hope you all had a nice 4th of July.

Re: Food effects/medicine

mcboarder - No-Doze is simply pharmaceutical caffeine pills. Since caffeine is a strong stimulant, it acts on our muscles similarly to adrenalin, making them VERY stiff, achy and weak. Most people get very 'wired' on caffeine, but I have found that it wreaks SUCH havoc on my body that it wears me out totally, within a matter of minutes, and I become so weak and sleepy and limp that I am practically non-functional. I do not drink ANYTHING that has caffeine - coffee, regular tea, cola, mountain dew, etc... and I stay away from foods like coffee ice cream, too. The only time I ever took caffeine was in Excedrin, if I had a migraine, because that over-rode any side effect on the MC - and besides, with a migraine, I welcomed sleep. So teach your son to stay away from caffeine, and he'll be a lot safer. (I find I can tolerate small amounts of decaf, but there's still enough caffeine left to bother me if I take too much! Lois

Re: Food effects/medicine

Wow! I am a coffee FANANTIC! LOVE IT! What can I do? I have never noticed that it makes me sleepy! If I don't have some java in the a.m., I would have a migraine! Maybe I am just psychologically addicted--love the smell, the taste, the creamers! So . . .I will have to think about giving that up! I did cut out the bananas! What a difference that has made! I also bought sea salt--non iodized. I don't use much salt anyway because of swelling--water weight. I would like to read more about the caffeine though--need to be more convinced that I would be better without it! I am feeling a bit sad about the fact that I have just gone through life stiff, struggling, eating like everyone else--maybe I could have felt better and been less prideful and stubborn and CRANKY! God, help me! Thanks!
Jill

Re: Food effects/medicine

Well, listen, Jill... it's a lot like allergies and other habitual usage issues - my son is allergic to oranges, soy, and a few other things - but we had no idea, because he didn't display traditional symptoms. When he was tested for allergies at about age 8, he was already so used to those things, that he had basically "inocculated" himself against them. When people use a substance on a regular basis for a long time, their bodies become accustomed, and often inured to them, so the symptoms they might ordinarily expect have long since diminished - or the person has become so accustomed to them, that they think they are normal. So if you are OK with it, then don't stop just because it is a stimulant - if you're dealing with it OK, then more power to you. I noticed from a VERY young age that if I had anything like that, I was just all locked up, so I just naturally stayed away from it - wasn't any big deal. But I have ALWAYS taking real ribbing from my fellow nurses, because they are almost ALL caffeine junkies, and couldn't understand how I could not be. I had no idea why, so just shrugged it off. I also love the smell of coffee - except when my husband makes it - for some reason, his usually smells like burned muddy water. LOL!!! Lois

Re: Food effects/medicine

I haven't had coffee or tea with caffeine since I was a freshman in college. I could feel the effects immediately but I think my adrenal glands may be more sensitive, and of course adrenaline makes myotonia worse.

On the rare occasions when I drink a soda, I usually get Mug Root Beer since there's no caffeine. However one time our local Subway switched to Barq's and I didn't know it and boy was I stiff and wired for a day!

Jan

Re: Food effects/medicine

Lois--
Why don't you tell me what you really think?? LOL I like you! So, I should be o.k. to continue my caffeine addiction! Hallelujah! What I would LOVE to do is go live at a spa for about 6 weeks and rid my body of all evil toxins, but since that's not going to happen, I will talk to my new friends at the MC FORUM, glean from your wisdom, and hope and pray that I can get some relief from the stiffness! I do want to try decaffinating to see the affects on the muscles. Could I go cold turkey and just take iboprofen to keep from getting a headache? Where can I go to read more about foods effects on chloride channels? All info is GREATLY appreciated.
Jill

Re: Food effects/medicine

You might want to check this link to a book excerpt for more information on caffeine and the chloride channel. It's focusing more on the chloride channels in the brain, but I think the same applies to the skeletal muscle...scroll up one page to the heading "Xanthines" to get the full description:

Xanthines

One of the tests they use to determine MH susceptibility is a caffeine test on the muscles - it causes contractures in those with the MH gene. Unfortunately the test is not very reliable for us and has to be done within 3 hours of the biopsy which is not possible for most hospitals since it has to be sent off to specialty labs.

Here's another good website from Johns Hopkins about caffeine including withdrawal syndrome (not fun!):

Caffeine Information

I went back to college to study nutrition and biochemistry in the 80s and spent several more years experimenting with different foods, vitamins and minerals to see what increased or decreased stiffness. I have never seen any other references to the effect of diet on the chloride channel...MC just doesn't get enough attention for research money for something like that. However the periodic paralysis website does have a section on diet and hyperkalemic PP is very similar even though it involves a different ion channel: Periodic Paralysis Website

Go to hyperkalemic PP in the table of contents.

Hope this is helpful!

Jan

Re: Food effects/medicine

Thanks! I will check it out!
Jill

Re: Food effects/medicine

Hmmm.... well, every time my husband goes cold turkey, it's kind of like living with some primordial monster. Periodically, he decides it is really bad for him, and just stops, and becomes the crabbiest, grumpiest old poot on the planet. Then he realizes that caffeine is one of his basic food groups, and mixes regular and decaf 1/2 and 1/2, and brews that. I have never smoked, been into alcohol or drugs, or used caffeine, but I AM a chocoholic, and so I definitely understand the insanity of trying to go cold turkey. Lord knows, it could lead to mayhem! If you're a really strong person, and are really secure that no matter what epithets you toss at people, or how crabby you are, they'll still love you, you might try cold turkey. Otherwise, maybe gradually weaning yourself is the better choice. You're less likely to get thrown out of your house. LOL!!!!!!!! Lois

Re: Food effects/medicine

oh, and by the way, forget the ibuprophen, and go directly to the straight jacket! ;-p lois

Re: Re: Food effects/medicine

Ha! I have decided that limiting my caffeine is the wisest choice for EVERYONE! I have just 2 cups in the a.m. then nothing with caffeine the rest of the day. I mostly drink water, and occasionally a diet rite for a "treat." I am trying to lose weight and am walking 35-45 minutes every day. I LOVE chocolate, too, but haven't had any in a while because I have NO self-control where it is concerned! I did read a GREAT article in the Prevention Magazine, June 2008, while in a waiting room yesterday. It had a list of good "belly-fat" foods--rich in omega 3's, protein, fiber--many sounded like they would be a good part of an MC diet as well. It included a dark chocolate bar that is actually HEALTHY, and a good milk substitute for calcuim--I MUST find one! You can go to www.prevention.com/healthiestfoods to print out a list. My stubborn spot is the two B's--Belly and B--bs! I have great legs, as most MC people do, but I look like an apple with really muscular, lean legs!
Now you know a little more about ME !
Well, here's to HEALTH and Happiness!
Jill

Re: Food effects/medicine

I have legs like a mini-Sumo wrestler. There's NOTHING lean about me, and really never has been. My musculature has always been extreme - my calves were always larger and harder than most athletic men's, and I'm only about 5'1"! And my thighs - enormous. And maybe the worst part is that my gluteus really is maximus! Of course, the more I exercised to lose it, the bigger and stronger everything got! LOL - that's what you call "****ed if you do, ****ed if you don't". lois

Re: Food effects/medicine

You guys are so funny - apples and sumo wrestlers!

My youngest daughter got tested by EMG for myotonia when she was about 16. The doctor wrote in his notes that she was a "husky youngster." That made her furious! She has always had the hypertrophied muscles, especially calves, quads and biceps.

On the other hand I look like I could blow away in the wind. My calves are maybe slightly larger than normal - I notice it when I try to zip up boots - but that's it. I don't bulk up from exercise and wish I could. My sister always had this incredible Olympic athlete body. My other conditions tend to cause muscle wasting so the MC helps balance that out a bit.

Count your blessings...I would rather be on the heavy side than always have to worry about getting enough to eat and having weight to survive a crisis like I just went through. Sometimes I'm so gaunt I scare myself when I pass by a mirror!

Jan

Re: Food effects/medicine

Please give me directions to your house, so I can drop off my extra 100 pounds - you may use however much of it you like, and no need to return the rest - just pitch it... maybe a bear will eat it!
Yes, I, like your sister, was always told I was husky, chubby, plump, etc. I always struggled, and knew it had nothing to do with "fat" - but I guess one day, after Josh was born, I must have decided that I was SO done fighting the labels, and just let myself go. It was a dumb stupid thing to do, but I have struggled for real, and mostly unsuccessfully, ever since. sigh!!
You guys are the best - I can say anything, and you'll just be kind and gentle and humorous. Thank you. lois

Re: Food effects/medicine

You make me smile! I, too, have always been "pleasantly plump"--a friend's dad told me this one time. I thought it was HORRIBLE. I am a little over 5'4" and need to shed 50-60 just to be comfortable--you know, bend over and tie my shoes without choking, etc. There is more to life, though, than struggling with weight. It is hard to lose because as I walk I gain muscle weight but I am seeing the FAT rolls trim down a bit! Thanks for all your encouragement and laughter. Lois, maybe we could meet for liposuction (sp?) and give our fat to Jan?
Jill

Re: Food effects/medicine

IT'S A DATE!!! Here in California, you can get it done on your lunch hour! LOL!!!!! lois